Sunday, May 8, 2011

Getting Back To It and The Upcoming Terrible

Oh goodness, where did the winter go? Well, we over-wintered the blog, I guess, and now it's time to drag her back out and dust her off and update everyone on what's been going down and what's to come, then figure out how to reincorporate blogging into the daily life. There's not a blogger app, unfortunately (that I know of, anyway). I've joined the iUniverse, though, and we'll just have to figure a way to make really brief, social-media-y type posts that are indicative of us having done something and doing something and then maybe sometimes I'll come and sit and write and say something about doubt and unschooling philosophy. Yes, there we have it: a plan.

So to bring us back... Well, it was winter in Ohio and it was long and it was gray and it was cold and there was snow. Maybe I'll get some photos posted in the backlog and you can peruse them at your leisure. Or maybe I won't. There are some there, but mostly we hibernated and I knit and the kids got into Minecraft and tried out sounding like fourteen-year-old boys much to my annoyance. There were holidays and there were trips and long days and short days and all manner of the in-between and underneath. Jon continued the slow march of completing his dissertation. The Long Winter became The Long Rain.

We have also, notably, at long last after a two-year struggle, settled upon a date for Aleks' bone graft surgery. He will be going under the big knife on May 31st. We had to wait so long for a number of reasons, which I've detailed before a bit. Most recently, once the expander was nearing its completion date, and I struggled to figure when to schedule other appointments under the ludicrous advice of doctors who have never, apparently, been patients, I had gotten the idea that this surgery might be in March. In the past, we have usually scheduled surgeries a month out, so I thought this would be no different. We visited the plastic surgeon, therefor, in early February, along with the audiologist and the otolaryngologist to determine whether additional procedures might be relevant while Aleks is under (indeed, they are).

Alas, I was mistaken on the scheduling time-frame, however. This surgery is special. It takes a very long time to do and must thus be fit in on its own day. Since pediatric surgeries are only performed by our surgeon on Tuesdays, we had to look far ahead to a totally empty Tuesday when the doctor is not on vacation. That meant waiting four months. This is, of course, fine, but I had gotten a bit expectant that things might roll right along and none of the other doctors or nurses or anyone else ever bothered to correct my assumptions, even as I voiced them out loud, repeatedly. No matter. A mere mental adjustment landed me right-side up and none-too-pissed-off in the end. Yay me.

The actual plastic surgery consult was rather amusing, however. The surgeon came into the office, I informed him of what we were there for since he had not read the chart and had not yet looked at the x-rays I'd had the orthodontist (who he works with (and likely golfs with) regularly) email over days in advance, and said, "Okay, we'll schedule that surgery. See you then." Or something to that effect. He looked then as though he was ready to get up to leave the room a mere fifteen seconds after shaking my hand hello, but granted me a questioning look of some sort which I suppose was to let me know that it was now my turn to let him not answer questions. I stopped him, though, and asked him to tell us a bit about the surgery. He did. I asked further questions about how it worked exactly and how long Aleks would be in the hospital and if he would need physical therapy or special diets. His answers were largely vague on the healing process, and descriptive enough on the technical aspects and then he boasted of his above-average success rates (with an absolutely hilarious preface amounting to "not to brag, but I'm going to anyway").

See, this dude is a hot shot. He is quickly climbing the administrative ladder. He worked on Lebron James' jaw malformation and the much-publicized face transplant team. He also worked in a bit about following his past patients through the rest of their necessary surgeries before handing over the reigns of long-hours-spent-chopping-people-up-and-sewing-them-back-together to the five new surgeons in the department. He's not just a hot shot, he's real classy too. Well, he didn't say the bit about chopping people up, that's all me, but he did offer his sincerest humble self up to us as a case he is generously following through on before retreating to the cushy cuff-linked enclaves of hand-shakery and Big Desks, not to mention what I imagine are ludicrously inflated salaries.

Which, okay, look, he's skilled. I want him to operate on my kid, I do. He's just kind of got the bedside manner of your run-of-the-mill douchebag. It was clear that we weren't doing him any favors by being there.

So the technical gist of it is this. About a week before the surgery, Aleks goes to the orthodontist and gets the wire on his braces removed for the time being. The surgery starts at the crack of dawn and goes for 4 to 6 hours, which, if my past experience is any indicator, probably means more like 6 to 8. I'm guessing 8. First, he'll have his new ear tubes installed since one of his old ones fell out early and our ENT doesn't trust the audiologists to do their jobs correctly, or, er, rather, doesn't believe the results of the hearing tests given what he sees. That takes all of eight seconds to do. We still don't know if Aleks will eventually lose hearing or if he'll have a perforated eardrum from these things forever or if he'll just continue to have to see an ENT every six months or so for the rest of his life and get new tubes every year or two. The docs don't know either. Luckily, the procedure is simple and fast and doesn't require much except, well, health insurance.

Next, he gets the hip part. They go into the interior of his left hip and scrape out a bunch of bone cells, which they then transfer to a hole in his front gum, funneling them in there and packing it nice and tight before sewing it back up. All of that takes about 4 hours. Then the doc's going to revise the nose a little bit to lift the one nostril and take out some of the extraneous scar tissue which is angling his right nostril down making the whole of the nose decidedly asymmetric. I also found out after the doc had left us for another patient that he told the assistant (?) doctor to write in the chart "lip revision" as well. He didn't mention any lip revision to me, though. Luckily, I've been at this awhile and had a fantastic and kind and genuinely generous plastic surgeon when we lived in Montana (of all places) who explained lots to me and I therefor know what a lip revision is. It's fixing Aleks' lip to make it more symmetrical and to lessen the scar. The assistant doctor or whoever-she-was seemed a bit concerned about this because if he does too much, it will be harder on Aleks. As she put it, "the kid's still gotta eat."

Given my impression of this dude, it doesn't really matter what he has whoever write in the chart as he'll see what he wants to do once he's in there anyway. We'll of course just thank him profusely for gracing us with his magic hands or whatever.

After all this magic-handing, Aleks will be in the hospital for a night or two. From what I've read, he'll need to be on a liquid-moving-to-soft-foods diet for 2 to 6 weeks (1-3 weeks liquid, 1-2 weeks soft). The doctor said that kids usually do their own physical therapy since they're so active in general, so Aleks probably won't need help getting moving again after all the hip stuff (which is apparently the worst part of all of this in terms of pain). I still don't know if he'll need a cane or crutches though. We'll find out when it happens.

Ten-ish days after the surgery, Aleks goes back to the orthodontist to get his braces wire back on (which I'm sure will be the last thing he wants to do). It takes 3-4 months to fully heal from all the cutting up and the only way to tell if the graft worked is to get an x-ray around then and see if there's bone growing in there. The national success rates are somewhere between 70-80%.

I didn't really like that when I first heard it because I hadn't really factored in success or failure rates into my thinking on the matter. It's not really part of the literature. Not that there is any literature about this stuff that's not in a medical text. I don't remember it from the one recent book written about cleft-affected children as most of it was about early surgeries and babies. In fact, most of the online information is pretty much the same - it focuses on the initial problems. I can Google all the individual stuff, but the information is spread out and unfocused.

So given what the doctors told me, the national rate is about that. Mr. Hot Shot Magic Hands, on the other, er, hand, has a success rate of about 90%. So hopefully in four months, there will be bone in there.

In those intervening four months, I have no idea what we'll be doing. I don't know if Aleks is going to totally be a rock star about all of this and bounce back like the badass he is or if it's going to be miserable and fraught with worry about his already too-thin frame and not eating. I'm approaching the date as a deadline. After the 31st, everything is very uncertain. My mother will be here with Bastian during the surgery and to help out for the week after. Friends have offered their juicer to help make nutritious stuff that Aleks can drink. The City Fresh season will be starting a week later and my volunteers have already stepped up to cover that first Tuesday so I don't have to.

I'm confident that no matter what, it will be fine. It's also going to suck. It already sucks. Aleks knows it too, but he's strong and approaching it as just another Dumb Thing He's Gotta Do. He says he's worried about pain, though he knows he'll be asleep and then also given pain meds. He also says he's excited about his brand new Lego Hogwarts Castle that we will be building together afterward. That part sounds pretty good to me too.

6 comments:

Oh boy, Anna....not envying you or your little man this adventure. As long as Dr. Nobedsidemanner actually HAS the Magic Hands, then psssht, that's all that really matters I guess. I just saw a BBC program last night that was showing how the face forms inutero when we're the size of a grain of rice, and how it fits together like a puzzle, with the area affected when you have a cleft palate or lip being the bit where the puzzle 'locks down' and the face is finished. They said it's the most common issue because the window for it to all come together is under TWO HOURS. It's just amazing it goes right as often as it does. I'll be thinking of you during the Horrible.

That all sounds pretty overwhelming. I hope the Dr. does indeed have magic hands and that this surgery is a huge success. Also hope that his pain is tolerable afterward. I'm sure you guys will have fun with that castle, and hopefully it gives him a good diversion. Will be thinking of you guys.

I think it is likely Aleks will handle this like the rock star he is, but I totally love and appreciate your way of allowing that possibility while also allowing other possibilities (does that make sense? I mean you're being open to whatever happens, and I admire that. Some people resist and / or want outcomes too much.)

Also: what are the odds you have a friend named Merryweather (I don't know if this is her given name, or her blog-name). My little sister's given name is the same, but with a different spelling of "Merry" (an "i" instead of a "y"). wowzers! Never met anyone by that name before!

Yeah, it is what it is. It'll be fine. The boys have colds right now, though, so we have to get past that first! I think when you have a baby born with a defect, you get sort of used to uncertainty. It's been my greatest lesson in life. I re-learn it all the damn tine. I'm really terrible at letting go sometimes.

Yeah, here, too. Although at first, we didn't know what was "wrong" with Remy (bc he didn't get an MRI until he was 3.5 and thats when we found out about his stroke, but it happened before birth, most likely).

And I totally hear you about the need to keep reminding yourself: here, too, of course. That's just part of being human.

About Us

This blog is intended to chronicle the life-learning journey of Sugarboot and Weasel, the youngest members of our unschooling family of four: Jon, Aleks (10), Bastian (7), and Anna Kiss, the primary author. Jon is an Environmental Historian, currently teaching as an adjunct, awaiting a tenure-track position to come through. Anna volunteers in the local foods movement and birth activism. Aleks is a precocious one, teetering on adolescence even though he's only just entered the tweens. Bastian dissects social interactions through imaginative play. We live in Ohio and are venturing toward the radical in every facet of our lives. One day, we'll build Hobbiton. For now, the Northern coast keeps us.